The Journey of James Weston

Sunday, July 18th, 2021 Last night Dad slept at the hospital so that Mom could get a night of sleep at home. Not so much for the bed but that it's more than 3 hours of sleep. Can one full night of sleep a week get Mom all caught up to continue 6 days of 21 hour shifts? We will see.  Around 1:30pm Dad did trach ties with the nurse. As the nurse suctioned him he gagged and then spit up. This wasn't really a vomit as much as a spit up. They were unable to continue with trach care and would resume again at 3:15pm along with a bath. We held off on the miralax this morning as well as the milk of mag last night, but we did continue with the prune juice today at 11am and 4pm.  Around 5pm, Mom noticed that his G-tube was leaking through his onesie so she changed that redressed his stoma with a new split gauze. He had several wet diapers also. At 6:20pm James had a massive diaper. Mom was washing her pumping bottles and syringes and heard James make some of the loudest bowel movements. ...

Saturday, July 17th, 2021 James projectile vomited again at 9:20am on the dot⁉️ WHY??? No one knows why this is happening every morning. This didn't happen in the NICU. We've gone over everything and nothing seems to be the culprit. The feeding times and feeding schedule has not changed. He's on the same amount of methadone and clonidine as he was when he was in the NICU. GI stopped by this morning and suggested that we continue his 6pm-6am continuous feed until 9:00am. And then only do two bolus feeds at 12:00pm and 4:00pm. Maybe at six and a half months BPD babies just start not tolerating their feeds...? Mom reached out to the Mom's of Trach Babies - BPD Facebook group and it looks as though this is pretty common. Some new suggestions could be using a probiotic instead of miralax or milk of magnesia. Also decreasing the amount overall yet supplementing the calorie count with Elecare which is a hypoallergenic formula with amino acid proteins instead of milk proteins. ...

Friday, July 16th, 2021 James did not throw up this morning! He had been every day this week around 9am. Mom diligently kept her eye on the clock and made sure that all the things were done to help James keep his food down. These things are: making sure James is sitting up, making sure his legs and feet are not pressed up against his belly, making sure the ferral bag is unclamped, making sure all the clips are on clamped on his feed bag tubing, making sure not to suction him when he's gagging, making sure the nurse did not put any medications in his feed, etc. After Mom held James to calm him down, he sat up in his Fisher Price Sit Me Up as well as his Boppy. He listened to a bunch of lullabies on a YouTube channel called Baby Bum. His favorite was "Head Shoulders Knees & Toes" since that is the song his primary would always sing to him. James listening to his lullaby. G-tube leaked because the leads were pulling on it. P.S. You can email James your love and support a...

Thursday, July 15th, 2021 Starting off needing to vent about the miscommunication in the PICU... Clinical Notes for the day: James presents to the pediatric ICU with a history of feeding intolerance requiring G-tube feeds. Feeds paused due to intermittent emesis- which initially resolved. Emesis resumed and GI was consulted. They recommended running feeds over a slower rate but parents did not want that. He is currently tolerating goal GT feeds: 20 mL Prune Juice BID (11A and 4P) +Bolus feeds 120ml over 45mins: NeoSure 22kcal at 8am, 4pm, and EBM at 12pm +Continuous feeds EBM 40ml/hr 6pm -6am. He is intermittently constipated for which milk of mag and miralax was started. He went 48+ hour without a bowel movement. Mom did not want glycerin suppositories used but after extensive time without BM she was ok with a mineral oil enema. He stooled well post enema on 7/15/2021. Please note that both sentences are red and completely made up. 1) We were told that the PICU team did not agree wit...

Wednesday, July 14th, 2021 James vomited again at 9:30am. Mom thinks it has to do with the farrell bag being clamped due to medication. He has a continuous feed every night from 6:00 p.m. to 6:00 a.m. which is run 40 ml/hour. During the day he has bolus feeds at 8:00 a.m., 12:00 p.m., 4:00 p.m. which are run over 45 minutes. So the issue is his first bolus feeds ends at 8:45am and then at 9:00 a.m. he has meds due. He has a full belly from a whole night of continuous feeds, then gets a very large bolus feed where he is clamped right afterwards.  Updated Measurements: Length 51.8cm Head Circumference: 40.6cm Abdominal: 46cm Updates to medications: We will start giving him miralax in the morning and then milk of magnesia in the evening for constipation. 🤳 Mom spent a great deal of time on the phone with Social Security. Did you hear? We got a letter in the mail that said they received return mail and therefore are discontinuing payments. We have no issue with our mailing address or...

Tuesday, July 13th, 2021 We gave him a glycerin at 6am and he then had a massive diaper around 8:30am, we then changed all of the bedding. At 9am he projectile vomited twice, we again changed all of the bedding and did his trach care. After that we had people stop in one after another. First the discharge coordinator stopped by, then ENT, then OT/PT, then the Pulmonologist, then the Doctor on-call, then the Speech Therapist. It's been non-stop and he is now just taking a nap at 1pm. We decided to put him on an acid reflux medication, Prevacid, to help with the vomiting. It could take up to 4 days for a full effect. Prevacid decreases the amount of acid in the stomach. It blocks an enzyme in the stomach wall responsible for producing the acid. This prevents proton pumps in the stomach from releasing acid. Decreased stomach acid gives the stomach and esophagus time to heal. Next week we will try the LTV since the Doctor next week is a big fan of it. James doing home vent trials is no...

Monday, July 12th, 2021 Weigh-in: 6320 grams (13lb 14.9oz) - James now weighs more than Tommy! Well let's hope so, Aunt Robin has been feeding Tommy some gourmet meals! Measurements: We will ask the nurse tomorrow to get measurements. At 5am Mom woke up to alarms to suction and change James' diaper. She noticed his sock was off and when she went to put it back on that it was damp. Feeling around she saw that we "fed the bed", which means his med port was open and his feed was being pumped directly onto his bed. This is the 3rd time this has happened since being in the PICU. This also means he did not get breastmilk or any medication during that time period. The nurse thought she may have been in the room around 3:30am to change his diaper. Well his feed runs at 40ml/hour so to calculate we know we definitely lost 60 mls of breastmilk being pumped directly onto the bed. Also there were chunks of breast milk and bile on the blankets. This means James was also pushing ba...